Topic: I HATE THIS DISEASE, WOULD RATHER HAVE ANYTHING ELSE !!!!!!!!!!!!!!!!!!!!!!!!
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Not enough room for all the exclamation marks.
I feel like I have been in a constant Herx since getting that IVIG. If I'm wrong than I will know in another 100 days or so. The pharmacist says it takes 4-5 half lives for it to be out of me. The brand I got has a 40 day half life.
I feel so sick. I was given 1gm of IV Rocephin for just 2 days while in the Hospital. It knocked me out and I was aching and fatigued.
Before I did 2 coffee enemas today and IV Glutathione I was dealing with: Legs and arms shaking as in Parkinsons, Head shaking before I even opened my eyes out of bed, all day anxiety, air hunger for like 2 hours, body aches, weakness, fatigue, malaise, and much more....
My WBC count went from 13K to 6.5 overnight from just one dose. Last time in the Hospital it was 16K, got 1 dose of Rocephin 2gm and the next day it was back to 8K.
My neuro doc. thinks my body might be trying to fight this now on it's own. This came from the mouth of the Chief of Neurology. He has never used IVIG for Lyme, but says this is a good possibility.
Here is a quote from an IVIG site: "Primary antibody deficiency
Primary antibody deficiency, or PAD for short, is a hereditary disease, which results in either a shortage of or a total lack of antibodies. This means that the body cannot fight infection as well as it should.
By taking intravenous immunoglobulin, you are boosting the amount of antibodies in your circulation to a level that can fight infection successfully. This level of antibodies needs to be topped-up every so often using Intravenous immunoglobulin to keep this protection going. "
Well I don't think I need any topping off at this point. I need this stuff turned off and out of me.
If Coffee enemas didn't exist, I don't think I would be here right now.
I hope to god, the IVIG is doing this to me. Torture is not even close to what I'm feeling.
If I'm NOT doing anything and I'm Herxing, wouldn't that be impossible ? Again, I'm getting some relief with IV Glutathione and Coffee enemas, and lastly big big cries. I do the crying on purpose and I'm sure there are plenty of toxins in those tears as I get relief from that as well. It just doesn't last.
What really sucks is that in order to cry I have to close my eyes and picture my brother being lowered into the ground, or I have to put on a sad song on the PC and look at photos of him while he was alive.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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bettyg
Unregistered
posted
twister
so sorry for all you are going thru but especially so sad in order to cry you must think of your late brother being lowered into the ground.
at my stepson-in-law's funeral when the pastor met with family ahead of the funeral, he stated men are taught NOT to cry.
he said, "i'm giving all of you permission to cry for your loved ones who have gone on before you".
i looked over to my dad, and he was crying! 1st time i'd seen him cry and that was 20 years ago when i was 40.
so twister, i am giving you permission to cry whenever you feel like it without having to think only of your late brother's death.
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posted
Hope for future i suffered with this mess for eight years and had 6 years of peace. You can and will get better but unfortunatly its a rough road getting there and your feelings are normal.
Posts: 112 | From Ohio | Registered: Aug 2006
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Lymetwister.
There is someone that your doctor could consult with--Dr. Marianna Castells at Brigham & Women's Hospital in Boston. She is one of two doctors in the U.S. that deals with drugs and allergies. She may be able to help you with the result of the IVIG. Look her up online or email. I will give you her contact. She is most knowledgable as to how to relieve these kinds of sympotms.
I had a huge drug immune injury from a cocktail of drugs and ever since, my body was never the same. However, she did help to key it down. She told me it takes years to recover from these types of immune assaults. Give her a try via your doctor.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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